Current ramblings

My little granddaughter McKayla was pretty sick from the stomach flu, sick enough to require being put in the hospital for fluids. Thankfully, praise God, she is at home now and doing much better. She is the sweetest little angel and I am thankful she is doing much better. It's tough to see a little one down and out. I didn't get to go see her, but talked to her and she sounded sooooo sick. Yesterday her requests from us were red and purple gatorade and blue popsicles, of coarse we obliged:) We kept little brother Korban while sissy was in the hospital, what a sweetheart he is. I feel so horrible that we have not gotten to have near as many nights at NaNa's as we used to. I hope we can improve on this. We used to keep the kids at least once a month overnight and that just hasn't happened since I have been sick. It actually made me feel better and took my mind off of my own sickness having Korban here. 3 years olds say the cutest things.

This has been a trying last couple of weeks for me emotionally as well as physically. I keep trying to pray to God everytime I feel scared, which is helping alot. I can't seem to get a good nights rest anymore, no matter how much medicine I take, I really think this is causing alot of my problems as my body and my mind need rest. I am to the point of almost having panic attacks, perhaps it is too much medicine in my body. I am going to talk to the Dr about a sleeping pill, perhaps that is my answer. I seem to spend all day trying to get the sleep I didn't get the night before and using various pain meds and crazy pills to accomplish this and it just isn't working.

My family continues to be here for me. This is so tough on them, please pray for peace for them as well. All of the kids will be here later for a small birthday celebration. I don't get to see the kids nearly as much as I want, so this will be a welcome day hanging out with all of them.

I am scared about Chicago next week, scared of what the Dr may say. I still am not sure if I can do this new chemo. I wonder if I didn't get a bit of the stomach flu and perhaps that is what made the week so bad physically rather than the chemo, so I am not sure if we will restart this chemo or what.

We continue to look at other options cautiously, we don't want to rush into something, like we did with surgery only to have it be the wrong choice. We are going to send my scans, etc to a Dr in North Carolina and also plan to look further into hipecc, the heated chemo for my omentum. I realize I give up way too easily and when I want something, I want it now, thankfully Norm grounds me to look at the whole picture, thank God. We know we have a great Dr in Chicago, but want all of the options we can get, but we need to understand them. As Norm, said of coarse we can find someone to do whatever, if we look long enough, but we need to make sure, since the surgery turned out to be not the best idea. Although I know I had to have the colon tumor removed, as Norm pointed out, they could have did the hipec then at the same time as my surgery.

So, I am asking for lots of prayers for our visit in Chicago this weekend. I am not sure which way our journey is headed and am extra scared. Hotel rooms are crazy up there right now with the holidays and so we will be going up and coming right back home the same day. It is tough to get chemo and endure the drive home, but money is tight enough and rooms are high enough that I am just going to have to endure the ride.

I want to really acknowledge how tough this journey is on Norm. He doesn't get a break from it except to go to work and we all know that isn't a break. Some days, well more days than not, he is my lifeline, I look to him for love, encouragement and hope. Some days, he is able to handle it, and some days he isn't. I dont give him near enough credit for hanging in there with me. I am glad he is my life partner and I love him so very much. I put way too much on his plate and expect way too much from him. I expect him to figure out the answers for me, and as we have learned, sometimes the answers just aren't there and I need to use patience, look to God and know he solves everything in his time, not in mine.

After rereading this post, I realize I need to talk with God alot more, that he can and will help me get through these seemingly impossible emotional times, and I need to thank God alot more for all of the blessings he has given me in my life.

I also realize that I have made blossom, my littlest dachshund spoiled rotten. Where I go, so does she. The other night when I was having a emotional breakdown, I sat in the floor and just cried, and in between my legs sat my little precious blossom. She just wants to be with her mommy, so I carry her everywhere I go, I do mean everywhere, she crys if she is not on my lap constantly, and yes she is on my lap right now, when I get up, so does she. the poor dog must be wore out!

Just a update

I still feel cruddy. I now have a rash to go along with the other chemo side effects. I think I just about have all of the side effects now, did I say this is not fun? I know it's not supposed to be fun, but I really don't think I can do this chemo. I talked to the nurse this morning and they want me to hold off Chemo this week and then see the Dr next week to figure out where to go from here. I feel like I am losing hope every second of every day. I feel like I have to make them understand that their are other options for me. I research them every day, every night, I am so frustrated, feeling like I am slipping between the cracks, with noone noticing at all. Losing hope, one breath at a time, one second at a time and I can't take it.

I guess to think positive this will be a happy birthday present to me, no chemo this week, since my birthday is this weekend, but I feel like I should be going for chemo, sucking it up, doing it anyways, thats the way we fight right? Or is my vision so clouded from this cancer that I can't even see when death would be a better option than this horrible type of chemo?
I am scared, I am lonely, today, I am cancer. I hate days like this.

The benefit is coming along nicely with my sister Debbie at the reigns. While donations for the auction are booming, not many tickets have been sold. If you are planning on attending, please let us know. We need ticket sales badly. There is going to be so many nice items up for auction at the benefit and so many have spent their time recruiting donations, now we need lots of people to attend. The benefit still feels so weird, I know it is needed, I know it is needed, I know I need it, but it feels weird when your name is the one on a benefit. I guess it's no different now, you always expect it to to be the other person, you always expect to be the one helping out with a benefit, not the one benefiting from the benefit.

I think part of my family thinks I have lost my mind, maybe I have and I don't even know it. I think it's what cancer has emotionally done to me, to Tami... I wish I could just wish this away, wish it away from myself and everyone I know that is affected by cancer affecting me. If only I could just wish it away, if only I could just beat it, there I said it, but i am a realist and I know that doesn't happen to people like me. What's the saying, if it wasn't for bad luck I'd have none? Ya I know I am so blessed from everyone who cares about me to even have them in my life, but I would much rather have them in my life, living life. Going to dinner, or going shopping or just a normal conversation on the phone, just living life, that's the way it's supposed to be, and that is when I question my motivation to fight this disease when I see everything it has done to me and to so many around me. I know they wouldn't say out loud that they wish I had done it any other way, but perhaps if I had stopped fighting, they would be on their way to healing now. I hate that they still have to go through even more with me, I pray that maybe, just maybe by some small miracle that I can be the lucky one, I can be the one that gets that miracle called cure. What I would give to have normal moments again..........
Cherish your life, Cherish your family and your friends, cherish the normal day to day things you do, you never know when something will happen and there won't be a normal anymore and you will miss the stupid little normal things you complain about. Make Memories with those around you.... do it now while you still can. I was just living life when something came into my life that made normal obsolete.. it is called cancer

Still not 100%

This day started off on a bad foot. I didn't get but maybe 20 minutes sleep all night last night with my stomach swollen and hurting. This morning I got up and knew I had to take some extra laxatives to get things moving so I called chicago and they recomended I try magnesum citrate, which I took, knowing it usually takes `12 hours for it to work. Took a pain pill and about half hour later, had to run for the bathroom. Not for the end your thinking. I am never a puky type of person, well I was this morning, the mag citrate didn't stay where it was supposed to. So then I was really scared, thinking I must have a blockage. I called chicago again and the nurse told me to go to the er, I asked if I could try a enema first, which they said yes, but don't mess around with this it could be a blockage. The enema worked! No more throwing up. My stomach is still really sore but hopefully I am on the mend. I am still running a fever from chemo I presume, and I am not sure if chemo will happen this week or not. This chemo is definitely tougher on me than I am used to. I hope we can find another answer and many options somewhere down the road. Somedays it feels like the road is getting ready to end and it makes me sad. I need to pin our Dr down a bit more and find out what is left for me and why he is so opposed to the sirspheres and hipec for me. They both seem like amazing miracle drugs and I want to know why they won't work for me. Thanks for the prayers, they definitely got me thru this morning, along with Kristi coming over and helping me. Poor Kristi probably never imagined she'd be helping her mother in law get a enema, thank god for her!

The new chemo

This is bad, this new chemo is bad. I feel so sick, nausea, fever, tired, constipated, can't sleep, heart flutters, cant eat, cant drink. I dont know if I can do this, I have to find strength from God. I can't give up yet, but i want to. This is what cancer is all about and I don't like it. I can't imagine going thru this again in just 5 days.

It is obvious that my onc is top dog as he was refered to by the radiation oncologist. even though the radiation oncologist said in email i was perfect for sirspheres, he came in and said My tumors are small and Dr benson is doing what is best for me and if Dr benson feels i need sirspheres, he will get ahold of the radiation onc. As I said it is very apparant of the food chain, and Dr benson is at the top. I wont even get to see him for two weeks.

I am truly sick of being tired, and tired of being sick, it is times like these that i don't know if i can go on. It's not supposed to be this bad, there is no way. Please pray for relief from the symptoms this chemo has created, and for healing. I just don't know if I can do this anymore an i feel sad about it. God please give me another option that won't hurt so much.

If you have called and gotten no answer it's because I am just too weak to talk to the phone, I promise I will get back to you when I feel better, I don't like leaving anyone not knowing what is going on, but just feel so bad, it's hard to move. Please pray for my family, I feel so badly for them, they are as helpless as I am.........

More arrows in the road of Life

Well as expected my regular oncologist says no to sirspheres, he says I need systematic chemo because of the spread of my cancer. So... we now have some decisions to make. We have some additional radiation oncologist emails from different parts of the united states so we are going to confer with them and see what they have to say. I also found out last night that there is a Dr in colorado that deals with the peritoneal mets, and was even told that many times they will use cyberknife if there are only a few rather than the 12 hour hipec heated chemo into the belly surgery, so there are options, it's just my oncologist doesnt' agree with the options. So we are faced with many decisions, please pray we get the knowledge to make the right choices. We aren't even sure if the radiation onc. that we talked to will go ahead if we choose to go with sirspheres since he knows my onc isnt in agreement and they are both from Northwestern.

We head to Chicago today to prepare for what will be my 4th type of chemo, 20th treatment in 14 months. WOW, thats a mouthful huh? Please pray for this chemo to go smooth with no reactions and easy side effects. It's always scary starting a new chemo, not knowing what to really expect and praying and hoping it will work.

I am still experiencing this pain that I think is a bladder infection so we will get a culture on that tomorrow as well.

I had a wonderful time with Liz, janice and Heather yesterday. For a while the cancer was gone and it was just 4 friends hanging out. That's the way it's supposed to be. I look forward to more moments like that! Thank you all for taking time from your busy schedules to come hang with me!

Barb, thank you so much for the cap you made me. I will wear it proudly, it means so much knowing you made it, Thank you so very much:) Everyone around me says I shouldn't shave my head yet, but my pillow full of hair tells me different, I am sure I will be shaving it soon

To my FoHo Gals, you know who you are, your the best! Thanks for keeping me in your thoughts and prayers and thanks for your offer to take care of personal business for me, THAT brings a HUGE smile to my face.

Onward we go, thru the path of life, may it bring the decisions we need, present challenges we can handle and give us time to stop and smell the daffodils along the way!

The good and the bad of it

Well, Norm talked to the radiation oncologist yesterday and he said I definitely would benefit from the sirspheres liver directed chemo beads... but he wants to make sure my reg oncologist is on board and that is where I think we will have the problem. Had we did this months ago, then we would only be dealing with the new cancer, and though only done in a few places in the U.S, they do something called heated chemo where they go in and pour hot chemo directly on the peritoneal cancer. So all we can do is hope and pray that we can get to a answer to help us. Chemo is on friday so I am sure we will be discussing this then.

I had the best time yesterday with my friend Liz. She came over and hung out with me and it was a lot of fun just talking about old times. She called me this morning and is coming back this afternoon and bringing even more old friends so it should be a lot of fun! I can't wait. No loneliness for me today:)

I have been having some pain issues since last night, I think maybe I have a bladder infection or at least I hope it's not cancer problems with my bladder. I have taken liquid moriphine twice trying to get rid of the pain. It is so weird the way medication works on me now. It eitherworks immediatley or takes hours to work, and sometimes it is like I have taken too much because it all hits at one time. I think this must have something to do with my sometimes slow digestion, so I am going to talk to the Dr about this as well. I am going to ask for the pain patch, at least that doesn't have to be digested to work. It scares me that I will overdose because of my slow digestion.

The weekend

First off, thank you all from the bottom of my heart for your comments. I am glad I have made a thumbprint on some of your lives. Please, also take your health seriously. Colon cancer is the second leading cause of cancer death, please get your colonoscopies, and if you feel something isn't right, dont stop til you figure it out. I am not sure my story would have changed much, but it is said it takes 10-15 years for a polyp to grow into cancer. Since I had a colonoscopy just 4 years before diagnosis, it probably wouldn't have changed my story, unless it was missed then, but if it had been detected then, they simply would have plucked the polyp out and life would be normal for me now. I wouldn't be looking at the end of my life at 46 years old. Don't think for a second your too young for colon cancer! You would be amazed at all the 30 years and up I have met since my cancer journey began, that started off the same as me, stage iv. Take care of yourselves, it could make the difference between life and death, literally!

For Christmas this year, well it's going to happen a little early for a few of the grandkids. I bought some lip balm making stuff for me and my two grandaughters to make together. They will have enough to hand out to friends for Christmas if they want, or enough to last a long time, I hope the memory of making it with me lives on for a long long time. I also got sock monkey making kits coming to make with McKayla, DeAnn and Korban. Again, it's the memory I want to create with them. I think back to most Christmas times and the hussle and bussle of shopping for so much stuff, and ya know what? I can't remember any more of what we bought than can anyone it was bought for. Times are tough, and time is short, so I have decided to do things with everyone I love that will make memories. Who wouldn't rather hang out with little girls making stuff than being in that mess we call Christmas frenzy to buy the best, the biggest, and for what? Homemade has always been best to me, memories well youcan't top memories.

Saturday was so nice, I got out with Nancy H to go check out the place for the benefit with my sister. It still feels weird, the whole benefit, and I still cry everytime I think of the generosity of people using their time and resources on me, but it also touches me deeply that they want to do this for me. I also got to sell a few candles at a craft show my other sister sherry was at. That was the most awesome thing to sell what I created oh so many years ago, I am so proud of Sherry for carrying on GrubbyLand Candles. It felt so good to do thru my sales speel and sell a few candles. I miss it so much.

Today I woke up hurting, well actually all throughout the night, so after taking pain meds and being so tired, the pain has went away and left me nauseated and feverish. So I have just kicked back and taken it easy most of the day. My aughter Sherri and baby RJ did come over earlier so it was great to see them.

I went thru a feel sorry for myself time last night. I was so lonely, none of the kids had called all day, and I was just sad about it, so I journaled, and I prayed and two minutes later Kristi called, and then Sarah called, so it was great to hear from both of them.

Some of the kids have asked for a recording of my voice so while I was gone yesterday, sweet Norm bought me a digital voice recorder. Ya know just when you want to say, Norm, we don't have the money for stuff like that, you just gotta smile and be thankful for the memories it will leave and worry about the money later. I have already recorded myself singing twinkle twinkle little star. I have sang that song to each one of my grandchildren and don't plan on stopping even if I am not here, NaNa will be singing twinkle twinkle, and I will be watching down on all my precious babies. Thy say kids can communicate with you once your gone, and I hope I get the opportunity to whisper in their ears one day just how much I love and miss them. oth Sherri and Sharon(Erics girlfriend) are pregnant and due next year and Sarah will be the greatest Mommy ever one day, so I know Nana will get to at least sing twinkle twinkle little star to all of my grandchildren, no matter what. So, Norm, instead of complaining about the money you spent, all I am gonna say is Thank You for helping me to create lasting memories.
I know I will forever miss my family in a heartbeat. I know that one day, they will join me in heaven for eternity and that is the only part of this that makes it even close to bearable.

Off for nap time....